Category Archives: Health

For the record, until this December I have never said something out loud in regards to Benjamin’s health that could “jinx” it. I refuse to even celebrate his birthday early; if it falls mid-week, his party is the weekend after. One year, his mylar balloons got loose… one flew away but the number 4 got stuck in the tree and Uncle Jimmy climbed up it for me because I was so freaked out by it.

But I jinxed it this time… Mom and I looked back a couple of weeks but couldn’t find a Facebook post about it so I must have said it out loud that Ben managed to go all of 2016 without going to The Stollery Emergency Room but on Boxing Day, guess where we were!

A four day temperature is cause to bring him in to see Dr. McGonigle and when the office is closed, the emergency room we go!

They checked his ears and lungs and gtube site but nothing. It was a resident (very kind one!) and a doctor I had never met before. As they were leaving after checking him out, they gave each other the looks of “what should we do?” And “I have no idea” and told my mom and I that they were thinking about running some x-rays on his gtube in case it was dislodged or his lungs just to “make sure.” While they were very nice about it, I had a sense that they were playing a guessing game and while being helpful, had no idea where to go with Ben’s care.

After they left the room, I looked at my mom and she shrugged so I went out to the desk; I asked the doctors if they felt my son’s condition was an emergency or if he would need to be admitted to which they replied “no”. I told them that I would much rather take him home them and call his regular pediatricians office tomorrow and come in a second time, then to have them run tests unnncessarily. I also told him that I was faily certain Ben’s tube is fine on the inside; I assured him that we would bring Ben back in if his condition worsened and that we had 24hr care in place.

And the truth is, If Dr. McGonigle or Dr. Chatur want us to run a hundred tests and were just guessing, I would do so without question!!

But they know my son and I know them.

The resident stated that he understood (again, very nice about it!) and asked me to give him a few minutes.

Then I closed our room door and burst into tears. Overwhelmed. It’s so hard to make decisions about your child like that, especially when they are already so fragile. My poor baby is sick and all I wanted was to make him feel better, not worse.

I called my husband to make sure he was alright with my call… that he was okay if we left the hospital and head back in tomorrow to see our regular doctors but mid-conversation, the resident returned and told me that our doctor was actually in the hospital and that they had paged him for us.

Dr. McGonigle came a while later and checked Ben out. I explained what was going on and that Ben had not been his usual happy, easy going, playful self and that he had been lethargic and unwilling to eat. He asked how long the fever had been running; I told him four days and that’s why we came in to which he replied “that’s right then.!” (Relief on this mama’s part to hear your doctor acknowledge that you should have brought him into emerge. I always feel bad if we’re taking up space unnecessarily.)

He told us that Ben has a viral infection and will need to run its course. Hydration and Tylenol/Advil. That’s it. No testing necessary. He also checked out his gtube site and asked that I bring him in next week to have his site “fixed” and for a follow up.

And then I hugged him and kissed his cheek because there is no one in the world like him. And I would say the same about Dr. Chatur. We are so lucky and fortunate and grateful to be under their care. Even Ben cracked a little smile when Dr. McGonigle came over. Those doctors are a part of our extended family.

My Ben is still down today but did play in his jumperoo for an hour, watching PJ Masks (his new favourite!) and that is a bright sign of better things to come.

And a reminder to never say things out loud before they actually happen (or so they don’t!). Xo

If you’re a parent who gets overwhelmed and/or frustrated and/or annoyed and/or outright furious about typical development questions that do not apply to children like my Ben…. yet are expected to be completed – read this.

My parents are right (how annoying!) – I only post when something is going wrong or has changed for the worst for Ben.

When Ben learns something new or improves a skill, we celebrate it but for some reason I don’t describe here how wonderful it is. Instead I leave this page for the downward turns and spirals that impact his day to day.

Ben’s seizures are changing. This is not uncommon for anyone who has any kind of seizure disorder and there are many factors that can contribute to it. Growth, general deveopment, age, health, neurlogical changes (and those are just the ones I’m aware of).

It’s scary though. Ben has been “stable” for nearly two years. His health has been moderately well since our foot fiasco in May 2013 and we feel like we have a pretty good hold on how to address his health. We haven’t been to seen his doctor since October; unheard of. We usually have a standing appointment – monthly, sometimes bi-weekly, sometimes weekly depending on what’s going on.

It’s hard to allow myself and justify being upset because days like yesterday are expected but that’s my baby. He is my six year old baby and he has the abilitiy to break my heart and affect me like no one else. I constantly worry for him but use that worry as means to push on through and as a force to ensurethat his quality of life is amazing.
The rational parent in me accepts that consistency is unattainable in the life of someone so medically fragile as Ben is. But the optimist in me knows how strong he is and that he kicks major ass considering what he’s been dealt with.

I think the timeline between posts on this blog are so distant because Ben is doing so well. I’m afraid to say it out loud as it tends to jinx his progress.

Two weeks ago, Francois and I (somewhat simultaneously) decided that it was time that Ben have his own room again. He hasn’t had his own space since he was an infant as from birth until the moment we got overnight funding, he slept in our room. And often on my chest or in my arms on the couch. Now that we have two lovely nurses that accommodate his sleeping pattern (also known as “without a sleeping pattern”) – it’s time to give him that space back.

Practically overnight, we cleared out our extra room that we had been using for storage, swapped beds with Avery so we could use her day bed in his room, purchased furniture, decorations and voila! After placing his personalized “B” from his Ma Tante Chantal outside his room door, Ben had a bedroom. He had.. HAS a space of his own.

Overwhelming but exciting! Best part – he laughs when we take him down there now; like he knows it’s his. I could cry just thinking about it. Such a milestone moment for our family!

I am writing you this morning as I am extremely frustrated by the approval and decision making process regarding services requested for my son. We, as a family, absolutely do not ask for anything more than we need or our son requires and ensure that we do not abuse the system put in place to support children like ours but we have come to a standstill with our contract with Family Supports for Disabilities.

Our son Benjamin has a rare neurological disorder called Ponto Cerebellar Hypoplasia Type 3; I’ll spare you the details as I’m sure you will just Google it if you’re interested but what it has meant for us and more importantly him, are countless nights of not sleeping. I’m not exaggerating when I state that our child does not ever sleep in a pattern or that he is up for hours at time each night. In addition to that, he is supplemented food through a gastrointestinal tube which puts him at risk for aspiration and choking due to reflux and sensory issues. For the past five years, my husband and I have tagged off and on to support Ben at night, taking turns sleeping the couch, watching Elmo with him for hours at a time or simply just playing with him but it’s come to a point where we are feeling burnt out. I feel we have made a good run at trying to do it ourselves. But the worst part of our exhaustion is how it relays to Ben; he definitely can feel the frustration when he’s been up since one in the morning and we’re tired. We try our best to be patient and accommodate him but for lack of better word – we’re pooped. This is not a normal circumstance. We want to be the best parents for him, provide him the best quality of life and to ensure that he’s happy and to do that, we’ve applied for over night respite assistance and have even registered and qualified for the service from Nurse Next Door (a private company) to watch Ben through the week 10p.m. – 6 a.m.

However – FSCD will not approve the funding needed which I do not understand. How is my child not considered as valuable as they funding requested?

I understand that FSCD may look into using the Supports Intensity Scale for future assessments and when that happens, Ben will without a doubt receive the financial supports he requires based on his medical and behavioral assessment alone but until then, I don’t believe that asking for overnight respite for him is much to ask; it will allow us to be our best for him during the day when we can engage him in his community, include him in social activities and allow him to have fuller days. How is that not worth what we’re asking for?
Please point me in the right direction…. a direction that allows us to provide nothing less than the best support possible for our son.

Ben had his foot surgery… months ago now but today when I was slathering him in lotion (mostly because he loves the tickle of it), I gave him a quick foot massage and he winced.

Where he had the pin and infection in his foot is a small little red indent. It’s clearly sensitive. And I am also clearly still sensitive because I burst into tears as I felt him pull his foot away.

I am still so angry that we let this happen to him and although there is no fault in it – shit happens… as his mother and protector I am furious. And I am sad for him. And I wish he knew how sorry I was that I let him hurt like that.

I’ve tried to write this post so many times but then I start to cry and can’t think of anything clever or properly thankful to write.

Francois and I are completely overwhelmed and appreciative of all the support we received over the past eleven days. When we started fundraising for Ben’s equipment we figured nothing bad could come of it and maybe we could get a little money to help us out.

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YOU have no idea how much the smallest of contributions has made. YOU who donated to us, have no idea how in complete awe we are of YOU. We are completely grateful for YOU.

We cannot say it enough so here it is one last time.. we sincerely thank each of you – those who contributed, those who shared on social media, those who passed along Ben’s message, those who hold him, care about him and love him as much as we do.

Nothing is ever easy in the life of a child with a disability. Complications turn into further challenges and their health is so easily affected, it’s frightening.

Ben was crying. He cried for six hours straight without comfort or rest. Nothing worked to stop him. Finally at four in the morning, I decided to take him to the Stollery Pediatric Emergency.

The doctor checked him out; mom and I insisted that it had to be something with his casting and surgery. He asked what had happened last time we brought Ben in and it turned out to be nothing. Really? I have never brought my child into the emergency center without being absolutely sure something beyond our parental control was wrong.

He took X-rays. He found a pin in Ben’s foot which we were unaware was there but later found out it was procedure with his surgery to help keep his muscles extended.

I insisted that he take off Ben’s cast. With little hesitation, he removed it and found Ben’s incision from the surgery and heel where the pin had been set infected. It was the saddest moment of my life. My son was clearly in so much pain and there was nothing we could do for him; we were frustrated with his endless crying. He was in pain. We didn’t know.

Once Francois joined me, we decided (unanimously and without discussing it even) to have the pin removed from his foot regardless of how it effected his surgery results.

Ben was put on IV antibiotics for a week and then moved to oral for another ten days. Home care has been coming out to help change the dressing with the wound. The podiatry clinic wanted to do his follow-up for the infection but I told them that his pediatrician would be responsible for his health concerns and that they could follow-up regarding the muscle/surgery process only.

For the first time since Ben’s birth, I felt as though a process wasn’t followed. Ben’s overall health was not considered. Timelines were too long for someone as fragile as Ben. My trust in the podiatry team is fractured.

We are not a family who often blames or points fingers; we understand that there are greater risks in all health matters when it comes to persons with disabilities but something was missed along the way. It’s frustrating as a parent as we expect doctors to be thorough and be consistent in their treatment. Benjamin fell through the cracks on this one.

It will not happen again.

~Ben is doing much much better now though. Weekly visits to Dr. McGonigle/Chatur and a better care plan.

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How to Read my Blog

If you're looking at this blog for the first time and wondering what it is all about - find the first post and go from there.
I have included every note I have written about Ben (starting June 2009) which will give readers a full background on how we got to this point.